Living With Crohn’s Disease

I’ve been sat here for a good 5 minutes wondering where to start with this post, because in all honesty, it’s really not the easiest thing to write about.

Never in a million years did I think I would get sick. And I don’t mean like getting a cold kinda sick, I mean life-long disease kinda sick. It just never occurred to me that my healthy body could be susceptible to something like Crohn’s disease.

For those of you reading this and wondering what the hell Crohn’s disease is, let me give you a brief explanation:

Both Ulcerative Colitis and Crohn’s disease are long-term (chronic) conditions that involve inflammation of the gut (gastrointestinal tract).And yes, I totally copied this from Google as my explanation sounded some what rubbish compared to this and may have included the word bowel– nobody wants to read, or talk about bowels now do they?

Except me of course.

Living with Crohn’s disease means every 6 months I have to talk to a random man (my doctor) about my bowels and how they are doing, and along with talking about why I don’t have a baby yet, this is another conversation I’d rather not be having. Ever.

It all started 3 years ago when, let’s just say, things weren’t feeling right. I’m going to try my hardest to spare you the gross details*, but all of a sudden I found myself in the bathroom a lot more than usual. Like a lot more.

You know that really awkward advert where they talk about having blood in your poo (did I just say poo on my blog?) and how you should not under any circumstances ignore this? You know the one. Well that was me. And all I could think about was Bowel Cancer.

So that’s when I phoned the doctors and had my first ever awkward poo conversation. Talking of which, isn’t it just really annoying when the nurse on the phone has to find out whats wrong with you before you’ve even stepped foot in the surgery? It’s not like they have a poo specialist at my doctors, so me telling her what was wrong really wouldn’t have made any difference. Nosey bitch.

Next thing I know, I was sat in front of my doctor– he was firing all sorts of embarrassing questions at me and I remember wanting to be anywhere but there. However, had I been thinking straight, I would have remembered my Gramps had Colitis when asked if there was any history of bowel disease in my family. It literally just didn’t enter my head. So my doctor came to the conclusion it must be a polyp (I don’t really know what this is but it’s not cancer so I don’t care) and that it was nothing to worry about– I just needed to have a Colonoscopy to double-check, then have it removed. Job done.

Colonoscopy. It sounds nasty right?

“Colonoscopy is a test that allows your doctor to look at the inner lining of your large intestine”. Again, I may have copied this from google because my description involved the words shove, camera and bum, all in the same sentence.

This is the fun part. (And by fun, I mean not fun at all.)

The prep.

The prep for a Colonoscopy involves drinking 3 litres of foul-tasting laxative because, you know, they’ve got to be able to actually see in there right?! So this means no food for 24 hours plus an evening of filing your nails whilst being unable to leave the toilet. True story.

I’ll spare you the details of the actual op, except for the fact they use sedative instead of anaesthetic which is such an odd feeling! It’s like being crazy drunk– you’re awake but you can’t function properly and you’re not really coherent at all. I drink a lot, so I’m kinda used to this.

After they had a good look around, and removed that pesky polyp, I was taken to a ward where they gave me a cup of tea and some toast with jam. Having not eaten for over 24 hours, it was the most amazing meal I’ve ever had!

I was dressed and ready to leave, and my mum arrived to pick me up. I remember the waiting area was packed full of people who had also just had a colonoscopy, and I assumed we were waiting there for the doctor to come and give us the all clear and send us on our way.

Except that didn’t happen.

For a while no one came and I thought maybe that was it and I could leave without ever having to speak about my bowels again. Then a nurse handed me an information pack on IBD (Inflammatory Bowel Disease) and said “everything you need to know is right here”, and then she was gone. No sitting me down and breaking the news gently to me, that was it. As you can imagine, I cried.

Looking back, I realise that most the people in the waiting room probably knew they were getting checked for IBD, whereas I thought I was having a polyp removed, so the shock was a double whammy.

The next few months were spent trying to figure out which medication was going to get my flare ups under control. The first 2 meds were so bad, even the smell of food sent me rushing to the toilet. So I was put on steroids, and not the kind that help you lift heavy weights in the gym (although I did feel pretty invincible), the kind that make you fat and hungry– the 2 worst combinations in life. I felt puffy, which as any women can tell you, this isn’t a great feeling. I couldn’t really see my collar bones anymore as steroids do tend to give you a lot of water retention. My face was starting to look rounder and even though I tried my hardest not to over eat, I failed miserably.

Steroids give you an appetite like nothing else and I started to crave everything.

I was on these for about 8 weeks when I decided that I wasn’t prepared to live with my moon-shaped face any longer. The doctors needed to find me an alternative or else. (Or else what? I’d be ill forever? Who knows.)

Cutting a long story short, I’m now on a medication called 6MP– “Mercaptopurine is an anti-cancer (“antineoplastic” or “cytotoxic”) chemotherapy drug”.The side effects I experience from this drug are slight hair loss, low white blood cells, and morning nausea. Which, in comparison to what I experience on a flare up, aren’t too bad.

Living with Crohn’s Disease hasn’t been a smooth ride and when I’m ill, the disease knocks me for 6. It’s the extreme fatigue that’s the worst and it took me ages to realise this was a symptom of the disease. I often have to remind myself that I am one of the luckier ones– I rarely experience flare ups these days and generally, Crohn’s doesn’t really affect my every day life. I also try not to think about the fact my Gramps had to have surgery in the end, which resulted in a colostomy bag. I’m told over and over that treatment is far more effective nowadays and that the specialists will do all they can before giving you a bag. But still, the thought is always at the back of my mind.

Crohn’s disease is degenerative and incurable but because it is invisible, people don’t really understand why I feel ill sometimes or why I worry so much about my future. They also forget that as a Crohn’s sufferer, I won’t jump at the chance of sharing bathrooms whilst away on holiday– just in case a flare up decides to actually flare up. (They like to take me by surprise, the bastards.)

So sharing bathrooms is out of the question, as is camping at festivals and long haul plane journeys but if you wanna talk about poo however, I’m your girl.

Your humour comes out so much in your blog, hope you can hold on to your bowels for many years to come, I managed to keep mine for 18 years ( when I was diagnosed) to this year when I had to let them go and have an Iliestomy. great blog x